DVT/Pulmonary Embolism

[Joseph]

The first, in 2004, was not diagnosed as such. After six weeks in the hospital, I got better and better on beta-blocker medication. In 2007 I had the second hit just out of the blue. Being diagnosed properly this time, I underwent pulmonary catheterization and got better right on the table. DVT was found in the left popliteal vein. What remained is a medium pulmonary hypertension I am on blood-thinner medication, the thrombus disappeared (so they say!), but the PAH (pulmonary arterial hypertension) is the same, and I am experiencing dramatic shortness of breath triggered even by walking. Though the tests are not too bad, I am considerably worse now. I had to quit my job four months ago (took up teaching instead). My folks are worried. I am 53.

Being hit by emboli right in the lungs is a terrifying experience. Is there anyone out there with the same condition? (I wish to meet only those who have survived!)

My story made the doctors in the region more aware of the symptoms.

[Flo]

Hi,

It's really a frightening situation, however, at 30yo i was diagnosed with chronic pulmonary embolism living. I got to the point where i was on 20% of one lung, that was 8years ago i did an embolectomy. Recently i notice i have being experiencing SOB again and really worried. In 2001 all my clots were removed from my lungs. I am worried but still find hope in the fact that i still have life. It was a horrible experience for me.
Flo.

[Joseph]

Hi,

you are too young for the condition, aren't you. I was 49 when fell ill, doctors missed the diagnosis at that time, so i had to 'perform' again 3 years later to get the right diagnosis.
Two of my 'mates' have already had endarterectomy, (two to four years ago), they are doing pretty well.
I experience SOB lately, and try to wave things away by blaming winter, cold, fog, mist, dampness. Docs do not consider me a candidate for surgery.
I have just read the "endarterectomy" site, it says symptoms may come back. Go to your provider for a check-up. I did, and my doc says I am anxious and nervous so he put me on a calming medication. What if he is wrong?
Now i can walk and have a rest every 60yds, pulmonologist says it will not get any better so basically i am glad to keep on breathing.
By the way, a 20yo boy in my neighborhood has been recently diagnosed with pulm. embolism.
See what spring will bring.
Keep me updated, ok?
Joseph.

[Tabby4469]

I'm a 39, female. I just was diagnosed with pulmonary embolism and one DVT in my lower left leg. I had bronchitis a few weeks ago and had went to the ER on 2/18/09 for that. The doctor just gave me the diagnosis of acute bronchitis and prescribed Albuterol inhaler for the chronic coughing. The nasal congestion and chronic coughing went away but replaced with SOB and dry cough. After over a week of having SOB after just a few steps, I went back to ER on 3/3/09 thinking maybe the bronchitis had turned to pneumonia. X-ray showed negative for pneumonia and after blood work was done they said they were going to do a CT w/contrast because they thought I had pulmonary emobolism. I was stunned needless to say. The CT showed I had multiple clots in my lower left lung. They didn't even tell me how many. They admitted me over night and next day did ultrasound of legs and discovered the one small DVT. I'm on Lovenox injections twice a day for a week and on 5 mg of Coumadin. I was surprised that they just kept me for one night. I start with the Coumadin clinic on Wed. 3/11/09. This is all so scary but I feel blessed after reading how this can be fatal that I went to the ER when I did. I have an 11 yrs. old son that I have to fight this problem to be around for him as he has ADHD, Bipolar and chronic bowel problems.

Tabitha in VA Beach

[Joseph]

Hi Tabitha, thanks for your report. Ive had w/contrast CT done last year, no clots were found- to my surprise and happiness- but i have experienced a serious setback - SOB - in the recent 2 months, so i have an appointment for tomorrow (March 10) with my cardiologist, wonder what he might say. I'm asking myself: if no clots, then what? Why am i so short of breath even at an easy pace? I have just started a Mikibo training course on the net to lose some weight, because i am hardly able to walk so that i can burn calories. I am a bit scared of A new diagnosis that would explain my present condition. And i have a 20 y/old son to help through the University.
I dont know where you all live, but i presume i live on the other side of the pond, that is Europe.
keep in touch,
Joseph.

[Tabby4469]

Hi Joseph,

Sorry to hear that you are having SOB. From what I have read about PE/DVT, they can come back after first having them. I pray that isn't the case for you. Good luck w/the weight loss. I'm obese and have lost some pounds through the course of being sick which isn't the best way to lose. I believe my DVT is genetic because my mom has always had problems w/them but none have ever gone to her lungs. I live in the United States in Virginia. I haven't ever had the pleasure of traveling to Europe although my job is to set up travel for others that go there from time to time on business. Thanks for responding back to me. It helps to know we aren't alone in this and that we survived!


In Christ,

Tabitha

[Joseph]

[quote="Tabby4469"]Hi Joseph,

Sorry to hear that you are having SOB. From what I have read about PE/DVT, they can come back after first having them. I pray that isn't the case for you. Good luck w/the weight loss. I'm obese and have lost some pounds through the course of being sick which isn't the best way to lose. I believe my DVT is genetic because my mom has always had problems w/them but none have ever gone to her lungs. I live in the United States in Virginia. I haven't ever had the pleasure of traveling to Europe although my job is to set up travel for others that go there from time to time on business. Thanks for responding back to me. It helps to know we aren't alone in this and that we survived!


In Christ,

Tabitha[/quote]

Hi Tabitha,
We are the pretty lucky ones, the thrombi could have blocked other veins or arteries all the way up the line. Our lungs acted like filters, so safeguarding our heart, brain, a.s.o. My provider says that eighty percent of the population is affected by emboli in the lungs. Most go undetected. A great percentage is diagnosed as being fatigue and treated with vitamins and other hilarious energizers. That's what they have done to me for three years. Another percentage meet their end, and only a small number are diagnosed correctly and in time. (and not by the coroner).
So put a smile on each others' faces, and be happy.
By the way, im a teacher of the English language. It helps me enormously to contact different people with this illness all around the world. And also as a musician, i can fool myself into ignoring my condition most of the time.
Bless you,
Joseph

[Joseph]

Hi, I'm back again. My condition has not changed that much, SOB is an everyday issue, it makes life harder anyway, I hate thinking about going anywhere farther than 100 yards away from my place. My students come to my apartment, and that is lucky, I have to make frequent stops when walking to the nearby store or to my bank, and what is really good is that I avoided flu so far, maybe a sign of something good happening to my lungs, I'm considering going back to the doc for a check, in fact I have some "seizures" now and then, they come and go and scare the whatever out of me, it usually takes two hours to recover and be able to sit up, I'm thinking of surviving on my own, I never miss cumarol, and thank God for each and every day I wake up to, maybe I'll "stick to fishing from now on", hi Tabitha, can you update information about yourself?
Keep on breathing,
Joseph.